Baby Liam’s Heart Journey

Monday, September 2nd 2024

Day 243 of Baby Liam’s heart journey outside of mommy!

Happy 8 Months my sweet Baby Liam!!!!

Happy 7 months post open heart surgery!!!!

Happy Labor Day!

This past month was slower than the last because Liam and I were both sick for most of it but we are both better now!

We went to the zoo for the first time, as well as, Moscas!

Liam is growing and hitting all of his milestones! The last time we checked he was 28 inches tall and 18lbs! His two bottom front teeth are out and I think he has two more on the bottom about to come out too!

We did have a check up with his cardiologist here in NOLA and everything is looking good (no changes since the checkup in June)! 🙏🏻

Thank you everyone for sharing in our journey and please keep Liam in your prayers!

Friday, August 2nd 2024

Day 212 of Baby Liam’s heart journey outside of mommy!

Happy 7 Months my sweet baby Liam!!!!

Happy 6 months post open heart surgery!!!!

This past month has been jam packed with all sorts of new things!
Liam rolls over both ways
sits up on his own
scoots to almost anywhere he wants
Pulls up to a standing position while holding onto things
Will “walk” while holding my fingers
He puts his arms up to be picked up
He has said “mama” a few times
He laughs and laugh and laughs
He has learned how to blow raspberries on mommy’s leg
He has tried carrots, green beans, squash. Sweet potatoes, chicken, turkey, steak, eggs, bananas, oranges, blueberries, nectarines, strawberries, and bread!
He took his first (and second) flight
He went on his first hike and did not like touching the snow (see pic 🤣)
Visited the aquarium
Saw tigers and turkeys in person and loved watching both
He loves swimming and ANYTHING outdoors just like his mommy!
He sits in a high chair at restaurants now
And sat in his first grocery cart last weekend
He also loves books and had his first trip to the library!

He amazes me every single day with how sweet and smart he is! Time is flying by and we have no medical updates since last month which is AMAZING!

He’s also cutting his two front bottom teeth and I believe ran his first fever because of it which made mommy so nervous but we got through it!

Thank you everyone for sharing in our journey and please keep Liam in your prayers!

Wednesday July 17th 2024

Day 196 of Baby Liam’s heart journey outside of mommy!

Liam weighs almost 18lbs and is 27.5 inches long!
He’s already wearing 12 month clothes due to his long torso and chunky legs!

He’s cutting 3 teeth that mommy can feel (two you can see)

We are trying all kinds of foods!
Carrots, blue berries, bananas, yellow squash, chicken, oranges, green beans!

Mommy and Nanny Tracy also put together his crib and will be transitioning him soon out of his bassinet!

He loves to stand holding our fingers but we aren’t quite crawling yet.

Maybe it’s our teeth, a sleep regression, or a growth spurt but we are struggling to sleep through the night again so maybe moving to our crib will help that!

Please continue to pray for us and thank you for all of your support!

PS we have no plans for a haircut before 1 🤣😭

Wednesday, July 3rd 2024

Day 182 of Baby Liam’s Heart Journey outside of Mommy!

Yesterday Liam turned 6 MONTHS OLD!

It was also his 5 month HEARTIVERSARY!

We celebrated Monday night with giving him carrots for the first time and he loved them!!!!

Thank you everyone for your continued support! Please continue to pray for us.

Tuesday, June 25, 2024

Day 174 of Baby Liam’s heart journey outside of mommy!

This boy is THRIVING!
2 weeks ago we went back to Houston and they told us that Liam is developmentally at a 6-7 month old baby in almost all milestones!
This was so exciting to hear and I’m so proud of him! He’s growing so fast and learning so quickly!!!
He’s mastered rolling over both ways and sits up for long periods of time by himself!
We are attempting baby cereal and will move to other foods in a few weeks!

We also so his cardiologist while in Houston. Remember that the most common issues after Liam’s particular surgery are: 1) a valve will leak and/or 2) his baffle will leak (the baffle is what closed the large hole)
There are no signs of either of these things happening!!! (Which is amazing news!)

However

Liam’s left pulmonary artery isn’t growing as fast as his right. This is not a problem at this time but it is something that we will watch very closely!
There’s also a tiny bit of blockage in his right pulmonary artery but again, this is not a problem at this time but we will also be watching this very closely.

We will continue to see his cardiologist/s every 3 months for now!

This reminds me to enjoy every single day that I have of “normalcy” with Liam because we never know what tomorrow will bring.
We are NOT living in fear, but we are living for the moment!

Please continue to pray for Liam, his medical team and our family! We greatly appreciate all of your support and can’t wait for Liam to meet everyone!

P.S. Liam’s Baptism was also completed a few weeks ago!

Sunday June 2, 2024

Day 151 of Baby Liam’s Heart Journey outside of Mommy!

Happy 5 Months Liam!

Happy 4 Month HEARTIVERSARY!

I can’t believe Liam has been here 5 months already! It feels like just yesterday I found out I was pregnant and yet a lifetime ago at the same time! I absolutely can NOT imagine life without him. I do not “miss” days before being a mom!

Liam hasn’t rolled over again since Mother’s Day but he loves to sit up and he loves splashing in the water!
We are in the “Everything goes in our mouth Era” and I know we will be for a while but it’s so fun to watch him explore new things!
He also sleeps anywhere which makes him a great “go go baby” and boy does he love to be out and about!

May God continue to bless this sweet child of mine and thank you to all of you for your continued prayers and support!

Monday May 27 2024

Day 145 of Baby Liam’s Heart Journey outside of mommy!

Last week we met Liam’s cardiologist in New Orleans and she did an echocardiogram and ekg and both came back clear!

We are so excited Liam is continuing to grow and do normal baby things!
He loves being outside, sitting up (assisted still) and playing in water with his duckies!

Happy Memorial Day everyone!

Oh- he’s estimated to be 15lbs and 14oz and 25 1/2 inches long!

Saturday May 11 2024

Day 129 of Baby Liam’s Heart Journey outside of mommy!

BABY LIAM ROLLED OVER FROM HIS BACK TO HIS TUMMY!
I cried sad tears because he’s growing up too fast and happy tears because this is a big milestone that I was worried about him being delayed with!

That’s all!

Thursday, May 2nd, 2024

Day 120of Baby Liam’s heart journey outside of mommy!

HAPPY 4 MONTHS TO LIAM!

Happy 3 month HEARTIVERSARY!

Liam is amazing!

He’s “talking” so much and has found his feet!
We are still working on rolling over but we LOVE sitting up (assisted) and have been a “geaux - geaux” baby!

He attended his first Easter mass, crawfish boil, birthday party, shrimp cookoff, and baseball game!

He meets all of his doctors in NOLA this coming month so please continue to pray for Liam’s growth and health! We aren’t concerned right now, but prayers aren’t only for hard times, they are to thank God for our blessings as well and Liam is my biggest blessing!

He can’t wait to meet everyone that has been supporting us!

Tuesday, April 23rd 2024

Day 112 of Baby Liam’s heart journey outside of mommy!

HAPPY 16 WEEKS TO LIAM!

Liam is amazing!

He is exploring his hands and his mouth, kicking, trying to roll over, holding his head up, loves being outside, laughs and enjoys when mommy reads to him!

He can’t wait to meet everyone that has been supporting us!

Tuesday, April 2nd 2024

Day 91 of Baby Liam’s heart journey outside of mommy!

HAPPY 3 MONTHS LIAM!!!

HAPPY 2 MONTHS POST OPEN HEART SURGERY!!!

Wow - I cant believe 1 year ago I had no idea that you were even possible!

UPDATE:
Liam saw his ENT today and they confirmed that his left vocal cord has repaired itself 🙏🏻🙏🏻🙏🏻

Unfortunately, in the same visit, they said that his swallow coordination isn’t great which leaves him (still) at a higher risk of aspiration so they want him to see a speech therapist. FORTUNATELY, WE CAN DO THAT ANYWHERE!!!

We see his pediatrician tomorrow here in Houston and then we plan to head to NOLA later this week!!!!

Thank you everyone for your support and prayers!!! Liam is my miracle that I will be forever grateful for and I thank each of you for helping me get through the hardest thing I have ever done in my life. Now to get the fun part started!

Sunday, March 31 2024

Day 89 of Baby Liam’s Heart Journey outside of Mommy!

Happy Easter!!!!!

Thursday, March 21 2024

Day 79 of Baby Liam’s Heart Journey outside of Mommy!

Tomorrow is 7 weeks post open heart surgery!

Baby Liam had a follow up with his cardiologist today and she said everything looks great!!!

He weighed 12lbs 2oz and is 25 inches long!

He had an echo and an ekg done! Both looked great and told us that the heart is functioning really well. As he grows we will monitor his valves for leakage but right now he’s showing no signs of leaky valves!
His blood pressure was normal and he’s oxygenating at 100% which is amazing!

We have been given the green light to discontinue his lasix which is so exciting!

We’ve also been given the green light to do all normal baby things! Including traveling with no restrictions!

We will continue to monitor him for excessive sleepiness, not wanting to eat or taking too long to finish his bottle, breathing heavier, not urinating enough, blueness in the toes, fingers, mouth and possibly chest but other than that I think I will sleep a little better tonight knowing everything looked good today!

We see his pediatrician tomorrow and the ENT for his vocal cord paralysis on April 2nd and then we won’t have to be back here for 3-4 months to follow up with his cardiologist and a neurology team to check on his brain development.

He got to see his surgeon today, Dr. Orr, pic below! He slept through his Echocardiogram and he wanted to show off his new kicks!

Thank you to everyone for your continued prayers and support!!!! You all have made this a lot easier knowing we have so many people rooting for Liam!

Baby Liam is THRIVING!

Tuesday March 19 2024

Day 77 of Baby Liam’s Heart Journey outside of Mommy!

Happy 11 Weeks to Liam!

Please pray for all good news this coming Thursday at our appointment with Liam’s cardiologist!

Sunday March 17 2024

Day 75 of Baby Liam’s Heart Journey outside of Mommy!

Liam’s 1st St Patrick’s Day!!!!

Happy Birthday Aunt T!

Friday March 15 2024

Day 73 of Baby Liams Heart Journey outside of Mommy!

6 weeks post open heart surgery today and Liam is amazing!!! All the scabs have fallen off of his scars and they look so good!

He weighs 11lbs 14.6oz as of today and slept over 8 hours last night!!!!!

He’s growing so quickly and he’s so long that he barely fits in his 3 month clothes that have footies on them!

He’s holding his head up a little more each day and has been exploring his hands and mouth!

As the 21st gets closer and closer my anxiety grows! Please continue to pray for us!

Tuesday March 12 2024

Day 70 of Baby Liam’s Heart Journey outside of mommy!

Happy 10 WEEKS OLD to Baby Liam!

He’s doing all the normal baby things (eating, sleeping and pooping 🤣) and I absolutely just love being home (in Houston) with him!

Please keep praying for Baby Liam and that his vocal cord paralysis repairs itself and that all looks good at our next cardiologist visit on March 21st!

Thank you to everyone that has sent gifts and treats! My mom brain is making the list and trying to remember who sent what so that I can properly thank you! The days just go by so quickly and never as planned so please forgive me if you sent something and I haven’t reached out in one way or another!

Friday March 8th 2024

Day 66 of Baby Liam’s Heart Journey outside of Mommy!

It’s been 5 weeks since Liam’s Open Heart Surgery

Baby Liam weighs 11lbs 3oz now and he’s so long that he’s growing out of clothes already! I wasn’t ready for this!

He enjoyed Maw Duck, Paw Duck and Great Granny visiting last weekend and Nanny Tracy coming to help for a week and a half!

He went to Louisiana for the first time (just a day trip over to Sulphur, LA and right back) and he went to Bucees for the first time! This also resulted in his first “road trip” and I think we did really well!

Today we went to the cardiac clinic and saw Angelea (one of our favorite surgery team members) and she removed the sutures from his incision because his body started pushing them out instead of absorbing them. He didn’t enjoy it but I promised him ice cream in a year and he accepted 😂

I am so thankful for your support and prayers! I thank God daily for answering our prayers and for giving me this miracle!

Saturday March 2nd 2024

Day 60 of Baby Liam’s Heart Journey outside of Mommy!

Happy 2 Months Baby Liam!

HAPPY 1 MONTH HEARTIVERSARY!
Thats right, it’s been 1 WHOLE MONTH since Liam’s open heart surgery!

It’s also been 2 weeks since we have been home (in Houston still)!

Baby Liam weighs 10lbs 8oz now! He’s growing every day and learning so quickly!

He’s lifting his head and follows Mommy with his eyes everywhere! He loves to be moving so we go on walks daily, car rides sometimes, and he loves his swing!
He enjoys mommy singing nursery rhymes and reading books to him too!

He went out to eat at his first restaurant last night with Mommy and Nanny Tracy! (See photo w red shoes)

I am so thankful for your support and prayers! I thank God daily for answering our prayers and for giving me this miracle!

Friday, February 23rd, 2024
Day 52 of Baby Liam’s Heart Journey outside of Mommy!

Happy 3 WEEKS POST OPEN HEART SURGERY!!!

It feels like yesterday and eternity ago all at the same time!

We are soaking up all the cuddles and working on normal 7 week old baby stuff!
*any tummy time tips are welcome*

Liam eats every 2-3 hours and sleeps 4-5 hours at night!

He really only cries when he needs to be changed or wants to be fed.

We love napping on Mommy!

TO OUR TRIBE:
Thank you so much for the continued prayers, thoughts and positive vibes!

Wednesday, February 21st, 2024
Day 50? of Baby Liam’s Heart Journey outside of Mommy!

Happy 7 weeks (and 1 day) to Baby Liam!

Pediatrician said he’s doing great!
Still waiting to follow up with his cardiologist and ENT.

For now we are focusing on life at home and just enjoying all the cuddles that we can!

TO OUR TRIBE:
Thank you so much for the continued prayers, thoughts and positive vibes! We are on the right side of things and we can’t wait to meet each and every one of you!!!

Saturday, February 17th, 2024
Day 46 of Baby Liam’s Heart Journey outside of Mommy!

SURPRISE IT’S DISCHARGE (round 2) DAY!!!

LIAM IS HOME (Houston house)!!!!!

He got his NG tube out yesterday after progressing wonderfully with his feeds from the bottle!

He’s a little cranky while “withdrawing” from his clonidine but nothing a little cuddling and swinging can’t console! Last dose was Thursday and this was definitely to be expected for 3-5 days.

He remains on his diuretic (Lasix) for now and likely for a few weeks/months.

We have follow up appointments with his cardiologist, ENT, and pediatrician in the next two weeks and after those we will know how often they expect to see him and be able to make a plan to leave Houston.

I knew today would be emotional but I didn’t know how emotional! We are so ready to start the rest of our journey together!!!

TO OUR TRIBE:
Thank you so much for the continued prayers, thoughts and positive vibes! We are on the right side of things and we can’t wait to meet each and every one of you!!!

Ash Wednesday, February 14th, 2024
Day 43 of Baby Liam’s Heart Journey outside of Mommy!

Happy Valentine’s Day!

Liam ROCKED his swallow test this morning and has been cleared to take the bottle at every feed!
HIS GOAL TO BE DISCHARGED IS TO TAKE 60% OF HIS FEED BY MOUTH!
Right now he’s getting 83mls every 3 hours which is a lot! The most he has taken at one time so far is 57mls.

With this big increase in volume comes some discomfort so we are working through that.

He still has 1 blood pressure med and 1 diuretic. Hopefully he won’t have the blood pressure med after today! He will likely come home on the diuretic.

Short and sweet today!

TO OUR TRIBE:
Thank you so much for the continued prayers, thoughts and positive vibes! We are on the right side of things and we can’t wait to meet each and every one of you!!!

Fat Tuesday, February 13th, 2024
Day 42 of Baby Liam’s Heart Journey outside of Mommy!

Happy 6 weeks Baby Liam!!!!
4 weeks ago we were discharged from NICU at TCH the first time.

Liam no longer has ANYTHING that can NOT get wet! His stitches from his drainage tubes came out today and they removed the steri-tape from his incision!!!!

We are settling into our new room and really just working on feeding right now!

They will be weaning him off of most of his meds over the next two days and will only have lasix left (his diuretic).

He no longer has any lines in him so we get to cuddle a lot more!

His swallow test should be scheduled for tomorrow (or the next day) Due to his left vocal cord paralysis they want to make sure he’s not silently aspirating as we start to feed him more by the bottle (and breast).

And

Liam just experienced his first parade.
The staff decorated multiple carts as their floats and handed out all kinds of Mardi Gras trinkets!
Liam can’t wear clothes just yet with his incision but he put his green and purple hat on that his Auntie Swil made for him and his fleur de lis crawfish bib and joined in the fun! They were both a big hit with the staff!
We “caught” beads, masks, a crown, rubber duckies, a plush and even a book!

TO OUR TRIBE:
Thank you so much for the continued prayers, thoughts and positive vibes! We are on the right side of things and we can’t wait to meet each and every one of you!!!

HAPPY BIRTHDAY UNCLE JONATHAN!!!

Monday, February 12th, 2024
Day 41 of Baby Liam’s Heart Journey outside of Mommy!

WE LEFT ICU!!!!!

Lots of BIG WINS over the past two days!

We have moved out of ICU and onto “The Floor” which is basically a step down unit for not as sick patients that are on their way to go home!!!! Don’t get too excited, they think we could still be here for a couple of weeks 😞

With the move we got 2 of the 8 remaining monitors off!!! He now has 5 leads on his chest and one on his foot.

He got his arterial line out on Saturday!

He got his NEO PICC line out today!!!! This line had all of his continuous meds going through it and as of 4pm today we no longer have continuous meds being given which is a HUGE WIN!

His feeds are going well! He’s up to 57mls every 3 hours through his NG (feeding) tube. Due to his left vocal cord paralysis he is only getting to take a bottle when OT and ST are here with us because he’s at a much higher risk for silent aspiration.
During his session with OT today he took 48mls out of the bottle which is AMAZING!!! One thing we have to do to go home is consistently take more than half of his feeds from the bottle.
To continue to make sure he’s safe, therapy is talking about ordering a swallow test where they give him barium (a liquid) and watch on an xray exactly where the liquid is going to make sure he’s not aspirating.

His blood pressure has been pretty stable but obviously still monitoring it.

He’s still on diuretics to help him expel the excess fluid from his body. He’s been fluid positive (taking in more fluid than he is putting out- which isn’t great) the last few days so we are working on the right doses of diuretics. He will likely come home on diuretics and remain on them for a little while once discharged.

He’s no longer receiving any nutrition through an IV which is why the PICC line can come out!

We are watching his basic labs right now but they have balanced out and it seems his kidneys are doing fine!

He has graduated back to a big boy bed!

TO ALL THE MOMS AND DADS OR ANYONE WITH A LOVED ONE:
ADVOCATE FOR YOUR LOVED ONE!!!
I never thought in a million years that I would question the professionals (just kidding- anyone that knows me knows that I’m not afraid to question anyone) but I have and I’m glad I have. There have been many times that by asking WHY something was being done has led to it not actually needing to be done. Also, knowing my baby (even though he’s only 5 weeks and 6 days old) and what does and doesn’t work for him (already) has helped him. Today we moved to a new room/floor and with that came a new nurse and a new resident doctor. Once we got down here the nurse told us the resident wanted to go ahead and remove his NEO PICC (as planned) but he also wanted to add an IV “just in case they need access”, so I asked “access for what?”
As you might remember, Liam has small veins and he doesn’t bleed well. Just this morning they couldn’t get the labs they needed from pricking his heel so I asked to have VAT team come and use the ultrasound machine to find a vein to draw two simple labs and the tech agreed that he’s “a hard stick”. He’s had multiple IVs infiltrate and two just go bad so the last thing I want them to do is stick my poor baby again for a “just in case” scenario and then it go bad if it’s not actually needed. They ended up not doing it. Had I not been here when they transferred him or had I not asked and just went with what the nurse was saying my poor baby would have been stuck again for no good reason.

TO OUR TRIBE:
THANK YOU!!!! Please continue to pray for a smooth road of recovery and that Liam’s brain injury never affects him.

🙏🏻🙏🏻🙏🏻🙏🏻

AMAZING UPDATE!!!! HUGE WIN!!!!!

Neurology just came by and they are no longer concerned about Liam’s brain “injury”. They confirmed the spots are TINY hemorrhages that should never affect him and will likely be absorbed by the body on their own!

My momma heart is so happy!

He also just took 32 of 39ml from the bottle so that’s a BIG step in the right direction!!!

Thank you everyone for the continued prayers and for sharing our story with so many! I can’t express how much I appreciate each of you!!!

💜💚💛 This picture is right after I told him we could go to Mardi Gras next year💜💚💛

Saturday, February 10th, 2024
Day 39 of Baby Liam’s Heart Journey outside of Mommy!

Liam has been breathing room air (unassisted) for over 24 hours now!
YAY!!!!!

He’s getting his arterial line/IV out today! They haven’t been able to draw blood from it for two days now so the doctors this morning decided to take it out.

He still has his NEO PICC line in his left leg where he’s receiving all of his medications as of right now.

His feeds are going well! He’s up to 39ml every 3 hours through his NG (feeding) tube. Due to his left vocal cord paralysis he is only getting to take a bottle when OT and ST are here with us because he’s at a much higher risk for silent aspiration. His session with ST yesterday went great though and he took 19 of 30mls from his bottle. They are coming by at 3pm today to work with him again.

His blood pressure has still been fluctuating so we are monitoring that and trying to manage it.

His MRI was yesterday and the neurology team STILL HAS NOT come by to discuss the results but all of the cicu doctors that have read the results have said they don’t see anything concerning which is great news but I’m STILL ready to hear it from neurology.

He’s completely off of pain and sedation medications and doesn’t seem to be in pain. If we do think he’s in pain, they will give him a strong dose of Tylenol before anything else to help.

He’s still on diuretics to help him expel the excess fluid from his body. He’s been fluid positive (taking in more fluid than he is putting out- which isn’t great) the last two days so we are working on the right doses of diuretics. He will likely come home on diuretics and remain on them for a little while once discharged.

He’s still receiving TPN and lipids (nutritions) through his IV but as we increase his feeds each day they are decreasing those.

We are watching his basic labs right now because his potassium has been high and his BUN has also been high. The BUN is an indicator of the kidney functions. Diuretics can stress the kidneys so we are watching this closely as well.

He’s getting back to himself, sleeping more regularly, making normal diapers, showing signs of hunger, all which are great indicators that the brain injury may not affect him.

We are wishing everyone a safe and happy Mardi Gras including Paw Duck riding in Endymion tonight and all of the Homburgs (and Bupp) riding in Thoth tomorrow but especially Queen of Thoth, Sarah Homburg and Junior Maid, Abigail!
I can’t wait to teach Liam all about da Mardi Gras! 💜💚💛
Our reading the past two days has been learning about the different parades 🤣🥰

TO OUR TRIBE:
THANK YOU!!!! Please continue to pray for a smooth road of recovery and that Liam’s brain injury never affects him.

Friday, February 9th, 2024
Day 38 of Baby Liam’s Heart Journey outside of Mommy!

Liam was weaned off of his nasal cannula yesterday but they put it back on a few hours later for over night. Today it has been off since this morning and they plan to remove it this afternoon after his mri.

The small drainage line under his sternum was removed along with the original dressing on his incision. The incision had one spot that was oozing grossness so they cleaned that up and put a new dressing on it that they will now be changing daily until it’s healed up better.

He still has his arterial line/IV which monitors his blood pressures closely for us and they usually draw his labs from this line so he doesn’t have to get poked or pricked but last night they weren’t able to draw from it so he had to get his heel pricked 😞

He still has his NEO PICC line in his left leg where he’s receiving all of his medications as of right now.

He has slept a lot better since yesterday afternoon.

He doesn’t like morphine (and mommy doesn’t like seeing him on morphine). He fights the effects of morphine and fights his sleep when he’s on it. He’s only gotten it once since Wednesday but that was one time too many for us.

His feeds are going well! He’s taking 20ml every 3 hours. Yesterday at noon we reintroduced the bottle with therapy assisting and he took 14ml of the 20ml straight from the bottle. Then again at 3pm he got a bottle and took 19ml of the 20ml. This is a HUGE WIN - especially since it’s been confirmed that he has suffered paralysis of the left vocal cord.
There’s nothing they can do about this right now and they “hope” it will resolve itself. It “could” affect his breathing and his eating so we are monitoring both of those closely!

His blood pressure has still been on the high side so we are monitoring that and trying to manage that.

He had an echocardiogram this morning to check out his heart after surgery. Everything is looking good so far.

His MRI was today and the neurology team said they can’t come by to discuss the results until tomorrow but the cicu doctor read the results and said she doesn’t see anything concerning which is great news but I’m ready to hear it from neurology.

TO OUR TRIBE:
THANK YOU!!!! Please continue to pray for a smooth road of recovery and that Liam’s brain injury never affects him.

You can send a Valentines Day card to patients at Texas Children’s Hospital through this link!

https://give.texaschildrens.org/site/SPageServer/?pagename=ValentinesCampaign2024&&utm_source=facebook&utm_medium=paidsocial&utm_campaign=php-ag_phl&utm_content=sst&utm_term=valentines2024_learnmore_valentines2&utm_id=tx&fbclid=IwAR03FmaOvo3kT9iRlukLRiyHrroivsJe-1QyXCXuI_SeAzCPWfBnxJXhH-k_aem_AWTQGM6CJkAIIkUCQndyKUwyjAHdnMz7fEgoxfq--crd3A2a64av4ohjggcQ6lduJueGuPJxNCOMCMrzNQ_P12xc

Spread the Love. Help more patients feel better with a gift to Texas Children’s Hospital.

Thursday, February 8th, 2024
Day 37 of Baby Liam’s Heart Journey outside of Mommy!

Another Big Win yesterday - Liam got his CPAP off and just has a high flow nose cannula in. They will be slowly weaning him off the nasal cannula throughout today!! He’s still receiving therapy where they come in and paddle his back to help open his lungs fully. He absolutely loves the paddling as it feels like a little massage.

The small drainage line under his sternum (that was added Sunday w the chest closure) remains with the bandage on his incision until TOMORROW!!!

He still has his arterial line/IV which monitors his blood pressures closely for us and they draw his labs from this line so he hasn’t had to get poked or pricked since Friday. As much as I know this one is needed, I’m ready for it to go because it bleeds multiple times a day and they have to change the dressing on it often.

They also took out his central line in his right leg that he was receiving most of his meds through along with his nutrition (TPN and lipids) and moved all of those things over to his neo PICC line in his left leg that he was receiving his sedation through. He’s no longer receiving sedation and only receiving pain management meds. He’s been having trouble sleeping since they stopped the sedation meds and fentanyl so tonight they plan to give him some melatonin to help.

They will be increasing his feeds this morning (at 9am) from
10ml every 3 hours to 20ml every 3 hours! OT will also be coming by today to work with him on reintroducing the bottle now that we are on the nasal cannula.

His blood pressure has been high so we are monitoring that and trying to manage that.

His MRI is scheduled for 12:30pm on Friday and they expect us to get results back the same day so our next update will likely be later on Friday.

TO OUR TRIBE:
THANK YOU!!!! Please continue to pray for a smooth road of recovery and that Liam’s brain injury never affects him.